Is anyone awake? I’m expecting bad news and I can’t sleep

[MyCake]

My dh is unwell and we have no idea what is wrong. We are getting scan results this morning but they were only to rule things out so probably not conclusive. However, I can’t see how this isn’t going to be something serious as he has declined so rapidly.

I feel sick. We’ve already lost most of his income through him being off work so I’m also worried sick about money. We have enough savings to manage another 2 months at the most.

My dc are already suffering, despite them
mot fully understanding how serious the symptoms are, as dh is pretty much housebound and I can’t physically drive them to all the clubs and places they need to go by myself.
I also work full time although thankfully I’m a teacher and break up this week.

My heart is broken just looking at him disappearing in front of me. The doctors are slow to take his symptoms seriously so sadly by the time he was sent to hospital he was already unable to work and very ill. It could of course be something very treatable but at the moment I feel suffocated with the fear of the worst case scenarios.
I am writing this as I’m lonely and scared and wondered if anyone is awake to say hello.

I have name changed in case anyone recognises me from this post. If you do, please don’t mention this as I am doing a great job of appearing strong on the outside.

He had the PET scan and things do seem to be moving faster now. It took a long time for any doctors to take it seriously and I am glad they are now. But I am also glad that I wrote the PALS letter which documents all of the errors and unnecessary delays.
Dh has deteriorated again this week and it’s so sad to see. He has a sibling visiting this weekend and another one on Tuesday which will cheer him up.
We will hear from the consultant on Tuesday but I am going to ring his secretary Monday to let her know that we are requesting a second opinion about the radiologist’s interpretation of his lymph nodes as ‘normal’ when he hasn’t even seen him in person. They are not normal!

I’m so sorry to hear he’s still deteriorating.

Are any of the lymph nodes bigger than 1-1.5cm? Above that may be considered abnormal. “Normal” also depends on sonographic features.

I'm so sorry this is still going on. Which consultants is he under? Have they suggested what they they think is wrong? I have a rare autoimmune disease with similar symptoms, Im currently under rheum, endocrinology and a specialist clinic at a different hospital. It took a lot of deterioration and hospital admittances before they ascertained what was wrong. Have they given any meds - steroids etc?

I:m glad he's had the scan and things are moving but it must be horrible going into another weekend still without answers or treatment

I'm at a loss now as to how this is gone on for so long... you say he's deteriorated further, I was under the impression he had already deteriorated and was really bad, how is he in himself? Can he walk around? Eat and drink? Go to the toilet? I suspect it's more a case of nothing had happened because the doctors aren't as concerned as you are....

@Shiningstarr
I honestly think he is going to keep deteriorating until he dies. I feel so powerless and even though the doctors are now taking it seriously, they can’t find the answer.
He had some symptoms for many months and saw the gp a few times. The first deterioration happened in November and he hasn’t worked or driven since. He has spent a lot of time lying down since then with the original neurological symptoms (but worsening), permanently dizzy, constant headache and visual issues.

He deteriorated rapidly again in December with weight loss and the lymph nodes enlarging. Everything else got worse steadily too including numbness, muscle twitches etc. By this point he was mostly having to lie down.

He then developed nausea and more weight loss and is sleeping more and more. His skin is a yellowish grey colour and he is very weak. The tingling, numbness, dizziness, headache etc is still there constantly.

This week his visual issues are worse and his vision keeps ‘going’, although I don’t fully understand what he means as he ain’t going blind but I think it’s connected to the headache and dizziness. The dizziness and headache are the worst ever and at first he thought it was because of the lumbar puncture but I think he is actually just getting worse.

He can walk around the house but then has to rest increasingly more. He struggled a lot to walk to his appointment earlier in the week and that was when he collapsed, mostly with dizziness.
He is struggling to wee now which is new and can get himself to and from the toilet as it is downstairs. He is very tired in himself and mostly horizontal as it eases the dizziness.
He hasn’t been able to eat properly for weeks because of the nausea.

Despite the first and rapid deterioration in November, we lost at least 3-4 weeks of being fobbed off by different people at the hospital. I can’t fault the consultant’s care and interest now but I am struggling with the anger at how long it has taken. I was telling doctors months ago that I thought this was very serious. I was ringing up neurology every day and yet I am the one who feels guilty as hell for not pushing harder and fighting for him more.
I’m not a hypochondriac at all and it is hard to explain quite how unwell he has become and how it continues to get worse. He was working a very physical job full time a few months ago and eating like a horse.

His PET scan was from the top of his head to his knees so very thorough. All of the LP, blood and scan results are being discussed Tuesday but I’ve been told to ring tomorrow to get a message emailed to the consultant with my questions and request for him to look again at the lymph nodes.

@GideonSmideon they have thought it was sarcoidosis since the middle of December but the consultant explained that it is very hard to diagnose.
They are also looking for lymphoma and I am under the impression that they can’t treat as though it’s an autoimmune disorder until they’ve ruled out cancer.

@GideonSmideon he is under neurology but they said he is being referred to haematology

@Mirabai I’m not sure but the amount of lymph nodes that are swollen has increased in his neck.
The lumps in his groin are hard and the registrar said he wasn’t sure if they were lymph nodes. He explained other things they could be but I didn’t understand that bit. I do think they are wondering whether they could be granulomas. They found unexplained/unexpected granulomas during routine surgery months ago, long before he was referred to the hospital because of the neurological symptoms.

@Musicaltheatremum no one has mentioned TB at all. He has an HIV test very early on and they also thought it was Lymes disease for a while.

@LizzieSiddal I have got a couple of great colleagues who I am chatting to. Most of my friends live quite away and I’ve not really told them how unwell he is, but I’m trying to see some of my local friends as it feels like all I do is work and worry at the moment!!

@Mirabai sorry, I’ve not had the time or energy to reply to many individual comments until today. I will see what the consultants says about the lymph nodes as we don’t want him to have an unnecessary procedure (especially as he’s had so many scans and tests already). But it’s helpful to know we could do it privately if necessary x

@BigGreen BIL’s hospital is over 4 hours away unfortunately

@SweetSakura I don’t feel like the nhs has failed him as they have been brilliant in many ways, but the first 2 doctors who saw him at the hospital were very dismissive and when the consultant saw him a few weeks later he was very concerned and it dawned on us how many things has been missed or dismissed.
I felt guilty emailing PALS such a long and detailed letter but I made it clear it was a record and a request for information rather than a complaint. To be fair things did seem to speed up after that.

I have followed this for a couple of weeks and it's such a hard read. I'm so sorry you're struggling with a diagnosis. It must be incredibly difficult- I just want to say how strong you are and he's so lucky to have someone advocate for him so well.

I know it's been covered before, but if he can't get himself to the toilet on his own, he really should be admitted into hospital. If he's not eating/drinking normally he will be dehydrated and weak.

Is there no way this can be done? Either with support of you BIL or just by ringing an ambulance?

@Shiningstarr
*isn’t not ain’t!!
I don’t know why it autocorrects like that as I never use the word ain’t!

I shouldn’t have said I feel he’s going to deteriorate until he dies but rather I am worried that is what will happen if they don’t diagnose him.
I honestly don’t think he or I have overreacted or worried as he is never unwell and I have never worried about his health before in over 20 years. It’s hard to explain how much he has deteriorated. It is a constant deterioration but not rapid apart from November/December. He hasn’t been able to walk outside or go in a shop etc for months but he can stand and walk in the house. He looks worse as time goes on too. Mostly thinner and older. He is only 41.

@ShirleyValentin3 He can get himself to the toilet as it is downstairs. The wee problem is that he has started to go more but not feeling he is going fully when he does. That has been fairly recent and he did tell the doctor when we saw him last Monday. He is drinking but not eating much. He’s eating little amounts more frequently which helps the nausea. Again, the doctors know this but both times when I queried admitting him they said that he’d be safer at home because of his immune system and also that tests etc wouldn’t necessarily be done more quickly.
I asked about dehydration and they said if he collapses bring him in!! I am making sure he does drink fluids

As he is drinking, has he tried liquid meal replacement products like Complan? Becoming nutritionally/minerally deficient is going to cause him even more problems.

It just seems crazy that he isn't being looked at more closely in hospital. I would be out if my mind, so please don't think there is something wrong with you. I'd probably be worse!
It does feel like nobody is taking responsibility for his care - which would (hopefully!) change if he was admitted.

Sending lots and of support to you, Cake. I'm glad you've got people around you to help you unwind

I can totally understand that. I was diagnosed with a serious rare neurological condition in the summer and simultaneously feel frustrated about how long I was fobbed off for but also amazed by some of the brilliant and swift care I have had since diagnosis. The NHS is definitely a mixed bag.

And I know people are baffled why he isn't in hospital but my experience is they will often keep you at home and come in for treatment /tests even when quite ill. Whether right or wrong it's certainly the experience of people with my condition

I also understand how someone could be so ill you are very worried in November and continue to go downhill.

I really hope answers and treatment are days away now

Something fairly small has happened and I’ve cried hysterically about it. I hardly ever treat myself and I decided to get myself something I really wanted for the house. Not overly expensive but a nice thing. Within 10 minutes of Getty b it out of the box something unfortunate happened accidentally and it is ruined, not completely but enough that it’s not as lovely as it was.
It tipped me over the edge as it was just another fucking thing to go wrong 😞
I know it’s not relevant to the thread but I needed to say it somewhere

Oh no! Of course it has tipped you over the edge. Could you buy another one? You definitely deserve to.

It's what I call the "fountain pen" moment after bumping into a friend who was sobbing hysterically because he had lost his fountain pen (not a particularly pricey one, just one he liked) and instinct told me there was more too this and I got him to somewhere quite and it transpired he was dealing with an enormous amount of grief and emotional pressure from several directions.

Be kind to yourself, and , if you can, replace it.

Ah @MyCake. That's just sod's law! The one wee nice thing gets spoiled. I get that it would tip you over the edge, because you can show your emotions over that, while masking your fear for DH.

Sending more hugs.